new and some questions

[Torsornin]

hi, My name is Erin, I am 26 years old. For as long as I can remember I have always been in pain, muscles, joints - skin even on some days, a lot of fatigue too.... Mornings are worse than evenings , I can have flare ups of really bad times - where it is hard to walk up steps I am so stiff and sore - and other times where I feel like I could take up running. This has been going on in some form or another since I was a kid. As a kid I was tested for lymes and RA and left it at that - everything came back neg so the dr said they were "growing pains" (which I only sort of believe in)

A few years ago I went to my dr for what I thought was tendinitis of my one wrist - I really just wanted to know if I should wear a wrist brace to help with it *roll eyes* I mentioned to him that I basically had a beard as well and that some sort of thyroid problem ran in my family. Well he tested the bejeebus out of me and sent me to an endocrinologist - who tested me further. Well I came back neg for everything - although the thyroid ultrasound showed a thickening on the right side consistent with Hashimoto's... but no treatable probs yet. (TSH etc was fine) said I needed to have it monitored at least yearly - which I do. always neg.

The endo asked me what my most annoying symptoms were... the pain! The pain and fatigue and that everyone thinks I am "lazy" or making this up... God no - I hate hurting... So off to a Rheumatologist as 99.9% of my symptoms sounded something AI.

Tested the crap out of me again. Sat me down and said, you have a + ANA but 25% of americans have it with no causes (me thinking - found yet) but everything comes up neg, take this med and come back in 6 months (cymbalta)... uh no I am not taking a med with out a good reason esp as I am only 26 (now then was I think 22/23) and who knows what the ramifications are fro taking this med for umpteen years. So I continue to suffer. but basically I tested neg for all the AI diseases that it sounded like I had (you name em lupus, RA bizarre ones no one has heard about)

New GP (as I moved) very nice started out beleiveing me just like all the docs do - told him my symptoms he agreed that it could  be something auto immune.... More blood tests... ANA came back + again - they tested it further it tested + for Sjogren's.... Dr told me this I was gob smacked - no my mouth isnt dry - eyes - I initially said no - but now that I think of it yes.... I was rather stunned at first, and it didnt really make sense to me.

Do I have it then if the test came back + and just not be bad enough to show classic symptoms? Do you have it for sure if the test comes back +?

For me my symptoms are
Extreme GERD - started when I was 19 - managed with OTC stuff mostly
Pain - muscle soreness/tightness - I seem to strain or overstretch things easily too this can relocate too - some times it is my back - other times my legs or on really bad days everything
Joint pain
Joint swelling
Fatigue
IBS type symptoms mostly loose stools
(also found out I was gluten intolerant and severely allergic to eggs - like swell up and die if I even eat something that has a little bit of egg as an ingredient bad)
Lately my hair is falling out badly, my nails breaking
With out being to graphic um everything I eat pretty much is identifiable on the other end. (I did go to a GI dr who said I had IBS)
over sensitive skin - love to break out into hives over nothing and everything sometimes even if I am upset I break out into hives.
OH not to mention I break out into hives if I am in the sun
Sinus probs -
I keep getting bronchitis every time I get sick I get *really* sick and end up with bronchitis and loosing my voice
Every morning I wake up with sleepers/boogers in my eyes so bad I must irrigate them out with saline.

Oh last year when I suffered a traumatic loss - I cried so hard so much that my one eye just seemed to stop producing tears at that time -like there just wasnt anything left - or that something was blocked _ I thought it was from to much crying - but now am starting to wonder...

For now I have been managing they symptoms (except the pain and fatigue)
I dont eat gluten (well sometimes I sin but I pay for it)
I NEVER eat anything with egg in it - or even take egg based meds (such as the flu vaccine)
I use sun screen/uv clothing wear a hat etc stay out of the sun a lot
I take 1mg (I break it in 1/2) of Imodium PRN like once every few days - the effects seem to last a while
tey to take vitamins, try to watch my diet try to increase protein for the hair/nail problem
Sometimes I ice or put heat on my joints
I try to stay away from NSAIDS but if I am having a super bad day - I take them for my pain
I have been trying to exercise and stretch - but am really having a prob with tightness and straining things - more than usual


What else can I do? Should I ask for a new RA dr? (since I have moved)
I just feel like all the drs start out listing to me - then they cant find a problem - so they give up or think I am lying. My mother always thought I was lying and was lazy when I told her I hurt so bad etc...It is just so frustrating. I dont like feeling this way

I want a diagnosis not because I want a disease, but because I want a way to manage it - and esp I want to be able to say to people I really am NOT making this up.

[Redetha1]

Erin, I take the Cymbalta.  It has helped the pain in my legs tremendously.  Cymbalta is indeed a med for depression but it is also used for other things..(married to Pharmacist).  I could not live without it.  I would not be able to go.  Also, my blood work showed nothing but a lip biopsy gave me the Sjogren's results.  You seem to have many of the symptoms that we all have.  As far as doctors go..keep searching until you find the one that helps you.  Don't give up the ship just because there are rats on it.  Ha!!  Hugs and keep posting.  I know very little but there are many on this board that due.  Take care and let us know how you are.  Hugs, Redetha

[Katybarstool]

Hi Erin

You certainly have been through the mill. I understand that 'lazy' suggestion from people who have no idea how we feel. I will let more knowledgeable people address your symptom concerns, but would just like to send you a hug, from someone who understands!

By the way, your name and the use of beejabers, suggests you have Irish heritage. I do too - I'm in the UK.

Kathyx

Kathyx

[Leisa]

Hi Erin, just want to let you know i feel your pain! This disease is so frustrating and people don't get it how much we hurt. Do take the cymbalta as they have found that people who suffer from fibromyalgia benefit from it. My Gp was just telling me they are coming out with a better med for us soon. Also when i have a major flare where i cannot leave my sofa my GP gives me a round of predinisone. This helps also when the pain is so intense. I can actually move with this combination a lot better. I hope you get answers soon and if i were a betting woman i'd bet you have Sjogren's! Take care and good luck! Keep us posted!

[eyeamdry]

Erin, it might help others comment if you say how *exactly* you tested positive for Sjogrens.  Was it SSA, SSB, anti-ro etc.

Thanks, Lucy

[jaygee]

Hi Erin

Fancy meeting you here!   I recognise your name from EE!  I don't post there too often, but I read a lot (I'm Wozzer).

Sounds like you have a lot of the symptoms.  I hope your doctor can help you with this.  xx

[Dolly Dimples]

   Welcome Erin,  Sounds like you have many of the symptoms that go with SS,

but like so many of us here, it's getting someone,  especially Doctor's who can recognize SS as something that can be serious!

        Many of them still believe that it is simply dry eyes & mouth et'c

      I was only ever told by a rhuematologist that I probably did have Sjogrens, and have never seen him again..

I certainly am not as serious tho' as a lot of the poor guys here .. or yourself!   I  still get very down with symptoms that drive one up the wall!!

                           Keep at it and  I hope that you get some conclusion soon.  Dolly

[Torsornin]

Hi Wozzer! I know you - fancy meeting you here too! Small world - thanks for saying hi!

Hi Lucy, TBH I dont know what part actually tested positive I was pretty shocked that something  *finally* showed up - I forgot to ask for my copy of the lab work (which I generally do - being a nurse I like to *see* it on paper) I do plan on asking my dr about it further. could you tell me a bit more about what the different positives mean - like how likely I am to have this?

My old Rhumey dr did want to put me on cymbalta - with out having a diagnosis - I dont want to mask something - or take a drug that isnt necessary esp at my relatively young (and child producing) age if it was a med to prevent damage or something it is a different story... I have taken mobic in the past which really seemed to help... but I flat out refused the cymbalta. -esp at that time.

Leisa - I have hurt almost my whole life - being around mostly older people too I thought it was normal... I remember a conversation with someone my own age as a teenager saying how long it took me to get moving in the am - and me assuming it took everyone that long to get moving - and was surprised when she was like "um no I dont have that problem" and then when another person told me that it wasnt normal to hurt all the time . I honestly never knew anything differently.

I  always have just pushed through - doing everything I need to do - just a lot slower than others - I used to be quite athletic in HS but paid for it. Exercise really seems to keep it in check - but I have gotten relatively out of shape and I am *really* struggling this time to get back in shape - I am having a flare up of whatever it is and am just hurting a lot.

Dolly - that seemed to be my drs opinion - but the more I think of it - I do have dry eye symptoms - but not always the gritty feeling - for me it is excessive tear production in wind or cold weather - I do have blurred vision probs too - at odd times of the day - didnt realize that could be dry eye. I dont know that comparatively speaking mine is "that severe or bad"  but it is really uncomfortable. Yesterday it was hard to lift my legs to step up into my horse trailer (I used my hands to lift my first leg - and I felt silly and stupid and like people would think I was exaggerating or something - but no one was around ... I was just so sore and tired and weak feeling -- so I cheated. There have been days when my hands were so weak and sore that I couldnt open a jar - I pawned that off on my BF and laughed it off on being a "weakling" But my hands wouldnt grip   But compared to some that have a constant dry feeling or burning in their mouth - well I know it could be worse. I just keep trucking on or make excuses for why I cant do something or why I dont feel well.

so I have a few more questions.

1. Where can I find out more info regarding +ANA and HOW and WHAT things mean and the different parts (as a nurse I was never really good at blood labs *embarrassed*) like what does SSA vs SSB etc - I really dont know much of these and the internet really isnt giving me the answers I am seeking here

2. Can you have "atypical Sjogrens" and have other symptoms be your main problem vs the dry eye/mouth?

3. Is it genetic or just unlucky - will I potentially pass this on to any children?

Hi Kathy - I am actually like a 5th generation or so American - with a strong Irish and German background but I also live in an area that strongly goes back to Irish and German heritage and settlers AND my name is Erin - how much more Irish can I get  lol and as far as my skin etc - I am so pale I make Casper look tan (you should just see my legs - they are blinding lol) There are a lot of things that people in my area do or say that go back to Irish or German things - that other people in the US dont say I love local dialects etc *so* interesting

[Billydude]

I take Cymbalta as well as it has the combined effect of helping with depression and pain.    Can I add one thing about gluten.  You absolutely cannot cheat.  You need to totally get gluten out of your system and when you cheat it is like starting over again.   Also,  has your doc considered that you could have fibromyalgia along with Sjogrens.  With all the muscle pain it sure sounds like it.
Steve

[Dolly Dimples]

  Hi Erin,  sorry I can't answer to much of your queries, but as you look through this site
you will learn pretty much of all the problems that some of us do have ..

  Perhaps some of our US friends can answer to the bloodtest query..

  I am in  the UK and our Docs never tell you much about the tests ....  apart from if they are pos or neg!!  ,  I think that is because our US friends have to pay for all their treatments,et'c, that
  they will receive written confirmation  and details set out on paper of all the results, treatments , et'c.

      I also don't think that because one of a family gets these complaints , that their offspring will automatically follow suit, although again many of us here do have children with different immune system related complaints.   I have primary SS , my daughter suffers with excema, & rhinintis,

     My eldest Grandaughter comes out regularly in Hives and has Endometriosis, and my youngest 18
month Gt Grandaughter has had a bad time with Excema since being 6 months old,  so you see it does happen..

  I can well understand you wanting to know it all , but SS is such a complicated business, and can be so different in all of us...Hence this site!
Stay with us and you will see what I mean   
  .  Cheers Dolly

[Linda196]

labtestsonline.com is an excellent resource for decoding lab results, although it isn't great with "normal ranges", it usually indicates that the "normals" vary so much from lab to lab that one list isn't very helpful. It does, however, tell you what abnormal results mean, and in the case of ANA, which disease processes can cause changes.